January 23, 2020
Writing about Pain:  A Workshop with Book Author Sonya Huber

Writing about Pain: A Workshop with Book Author Sonya Huber


good afternoon everyone thank you for
joining us for our webinar today we are very excited to get started but we are
gonna wait just 2 to 3 minutes while people log on in case we have any
stragglers so hang tight and we will be with you shortly you hi everyone welcome to our webinar we
are just waiting a couple minutes before we get started to give people a chance
to log on so just hold tight and we will start in a minute or two thanks so much you hi everyone we are going to get started
in just a minute or two to give people a chance to log on so just hold on for
maybe one more minute and then we’ll get started just gonna wait maybe 30 more seconds
and then we will start the webinar thanks for your patience okay it is 103 so we are going to get
started thanks so much to everyone for joining us today
we are extremely excited about today’s speaker Sonya Hooper it’s definitely a
wonderful very interesting workshop and then following workshop we’ll have just
a couple little updates from us pain Department staff my name is Emily la
Miska I am director of communications and I’ll be sort of I’m seeing the event
today so I’ll go through some housekeeping items at first then we’ll
be hearing from Sonya and her wonderful workshop we will have some time for
questions at the end of Sonya’s presentation so you’ll be able to ask
those and then like I said before we will have just a few quick updates from
the different departments at us pain so we hope you can stick around for that just some housekeeping items hopefully a
lot of you are already familiar with our webinar format but you can enter a
question at any time by typing it in in the control panel at the right even if
you’re typing it in during the presentation we might not get to it till
the end of the presentation but you can feel free to writing questions as they
come to mind and we will do our best to answer all of those if we don’t get to
all of them you’re always welcome to email us and we will get back to you I
also wanted to make sure everyone is aware that there is a handout that some
are created for us and that is available to download on the control panel at
right it’s called Sonia Huber handout and that has some information and just a
note that that will you know once we close down webinar that will disappear
so if you want to download it please do so now also as with all of our webinars
this is being recording recorded so that way you can watch it at a later date if
you want to if you enjoy it hopefully you can maybe share it with a friend or
if you have to jump off early just know that you can refer back to it and those
are all posted on our website at US Pain Foundation org
slash webinars and so this event it is one of our bimonthly webinars but it’s
also part of our November campaign which is our very clever little title for
November and an educational campaign that we do every year and this year the
theme is art through pain and of course you know art isn’t limited to just
visual or it can be writing it could be so many different things but that was
sort of the catalyst for having Sonia speak with us today and so this is
actually the last event in this series for the month but that said we do still
have the opportunity for you to submit your artwork to be included in a
slideshow at our next newsletter so we welcome you to do that just visit the
website up on your screen here and do that by this Friday for inclusion in the
December newsletter we’re also going to be thinking about ways we can use
artwork that’s submitted maybe in a future invisible project or in a blog
but we will definitely be in touch with you about that
so encourage you to check that out so without further ado I’d like to
introduce Sonia so Sonia is the author of five books including the
award-winning essay collection on chronic pain pain women takes your keys
and other essays from a nervous system her other books include open nobody and
cover me a health insurance memoir her work has appeared in The New York Times
brevity creative nonfiction and other outlets
she teaches at Fairfield University which is here in Connecticut and in the
Fairfield low residency MFA program you can find her online at www.atlona.com at
information is on that little handout we have for you guys so with that I’d like
to see if we can get Sonya’s webcam up here and I will
oh there she it wonderful thank you so much on your for being here I know you
know as a director of communications and a writer and so excited to hear from you
and I know a lot of people are excited as well so we really appreciate your
time and with that let you take it away okay awesome thank you so much um yeah
and so thank you to Emily and to us Pain Foundation for existing and for inviting
me to do this yeah I’m just very excited to be with
everybody who is interested in these two topics cuz they’re both really close to
my heart so I thought I would start out by telling you a little bit about me I
was diagnosed with first with Hashimoto’s thyroiditis and then really
quickly after that with rheumatoid arthritis in 2009 2010 so so yeah it’s
coming up on my 10 year anniversary of having pain and I thought I would go
back to sort of the beginning of that experience to kind of describe a little
bit about what led me into writing about pain at first after I got diagnosed I
just you know I spent a lot of time lying in bed at the time I was working
full time as a teacher I had a five-year-old and you know I was
freaking out like many of us do if we have adult onset diseases and are
suddenly struck with pain and um you know at first what I really felt was a
was really wordless and that was really scary for me I think as a writer or as a
human being it’s terrifying to suddenly have a new experience and have it be so
overwhelming that I couldn’t find words for it and so what started me writing
about it was first just you know making notes on my phone to just try
survive to keep myself sane and to just kind of not panic
I was listening to a lot of Buddhist podcasts and you know one of the things
that really comes up a lot in Buddhism is the idea of impermanence and constant
change and some of the meditations I was listening to there was a lot of emphasis
on body awareness and body scanning and so it started me to think about the idea
that rather than being crushed by like this anvil of pain I was actually having
a lot of different pain sensations in my body that changed over time and uh and
that was sort of a real wonderful revelation to me um I think for people
that don’t have pain they often think of it as like just like a big X like it
just cancels out your life and your your daily experience and and I started much
later when I when I was writing the book pain woman I was wrestling a lot with
the work of Elaine Scarry who’s a theorist who wrote a really important
book called the body in pain the making and unmaking of the world and she had
said in an interview she basically says she’s talking about pain in the context
of torture mostly but she talks about pain as being a wordless experience and
that really um terrified me because uh putting words to things is how how I get
through them so she talks about pain as being something that saps language from
us and you know while I haven’t gone and through any kind of extreme excruciating
pain that very well might SAP me of words the kind of chronic pain
I live in I think there really is a possibility of putting words to that
and not only is it possible but I found it
you know just completely essential for my survival to do so so so yeah so what
I started doing laying there and doing these body scan meditation was that I
also started indulging in one of my favorite vices which is metaphor
so everybody who is in my my writing group knows that I have a metaphor
problem and that I have a special metaphor problem when it comes to Star
Wars so every single thing I write in the first draft like Princess Leia and
Chewbacca appear like there are solar systems there are asteroids so yeah I
just I’ve got a serious metaphor problem I love them so much um so I started
really indulging in that because I had a lot of space in my head to do so so I
started kind of going wild in my head with trying to find metaphors that would
explain the pain and my joints and the fatigue in my body so I thought it would
read just of the very beginning here’s my book it’s got a nice colorful cult
cover and that was actually really important to me to and University of
Nebraska Press which is my publisher they’re really wonderful and you know
what I asked them was that I wanted something that had a bunch of different
pieces because I wanted the image to of pain having pieces and parts and it not
being a big unifying canceling canceling thing so here’s one of the first weird
extended metaphors that I wrote and this is from the first essay that I ever
published about having pain and it’s called the lava-lamp of pain pain moved
into my body five years ago it wasn’t the whack of an anvil or the burn of a
scraped knee Paine sat Wormley on the surface of my
hands up to the elbows like evil pink evening gloves with a sort of swimming
cap clenched on my head with blue plastic flowers at the base of the neck
Anna nauseating blur in the eyes at other times the pain was a cold ache at
the knuckles with a frazzle in the stomach and a steady and oblong ache
from hip to hip across the pelvis it was a rigid curled ache in the toes like the
talons of a predatory bird um so I I break a lot of rules in writing and
those metaphors in that number one they are very mixed so in a lot of writing
workshops you hear that the advice not to mix your metaphors and so I’ve got a
predatory bird right there with evening gloves and you know just a bunch of
other things it’s like this word salad of metaphor and and that really appealed
to me for a bunch of different reasons first of all even though I was in pain I
still wanted to have fun with language and I just feel like you know that even
though I’ve written a collection of essays about chronic pain even though
the topic was serious I let myself get go completely off the rails when it came
to like playing with language itself as a way to kind of balance the experience
so um and another thing that you probably noticed in there is that a lot
of them so the language sort of veers off into nonsense a little bit so I sent
this first essay in to the rumpus and you know what happened to me after that
was I was very unsure about it because it’s really weird and and then after
that finally got published I heard back from a lot of pain people that I was
describing something in a weird way that they had
also experienced and yeah I think pain is kind of a weird trip in a lot of ways
and so the encouragement from other pain people is what really motivated me to
try and keep playing with language and and I really think that it feels in a
collaborative book project because I don’t think I would not have continued
writing the essays if it hadn’t been for the experi the the encouragement of
other pain people so I’m one of the things that I think is so important
about using metaphor is that using metaphor really helped me to to change
my relationship to pain in my own head and in my life I felt at the beginning I
really did feel very overwhelmed I felt like as soon like wherever I looked pain
was right and wherever in my body pain was and pain was affected every corner
of my life and then the more I tried to be very exact about the metaphors the
more I found that that pain wasn’t actually everywhere and the image of the
lava-lamp meant this has meant a lot to me because it’s a shifting nature of it
means that it changes and if something can change that means that it’s not all
pervasive and all crushing and that’s been something that I’ve I’ve really
needed both as a writer but also spiritually as a person to know even
though I feel really bad in this present moment wherever I am for example the
next moment it’s gonna feel slightly different so you know when I think I’m
so interested at the way to I wanted to share a little bit of research about the
fact that it’s not just me that is really interested in the intersection of
um lang in pain so as I was researching for the
different essays and kind of collecting them over a couple of years I came
across the work of a really important researcher dr. Ron melzack and he he
started researching pain it says it’s been his entire career and his name is
listed on the handout if you wanted to google him and look him up he also has a
lot of great videos um so uh what he did was he started working with people who
had phantom limb pain and she listened to them and he asked them to describe
their pain and it always gets me choked up just thinking about it because so
often were asked to rate our pain you know on a 1 to 10 scale or for me in
ways that just don’t capture the experience and so the fact that he took
words from pain people and then he used those words and he you know he grouped
them in sets and he analyzed them and he made this beautiful thing that’s a
clinical instrument called the McGill pain scale and it’s named McGill because
he was working he works at a pain Research Institute at McGill University
in Canada so there’s a link in the handout there’s a short form McGill
questionnaire and a long form Miguel questionnaire this beautiful thing it
feels to me like a poem generator you go through and you pick it out it sort of
elicits a very specific response to the kind of pain that you’re having at a
certain moment in time researchers use it it’s been shown actually to be cross
culturally consistent so it produces real data for doctors at the same time
that I think at least for me as paying person here was this instrument
that uses language that really made me feel seen and it made me feel sane so so
I write and I have this like fantasy in the book about going on a road trip to
bring dr. Mills act and you know some cookies and I never did that because
that would be kind of stalker you but I wanted to okay so then the next exciting
thing that I found really recently about metaphor is that I was recently on a
medical humanities chat on Twitter with a bunch of doctors and one of the things
that one of the clinic I was talking about metaphor and I was tweeting about
pain woman in my experience and then a doctor shared a study with me and this
link is also in the handout it was from 2013 and the clinical Journal of pain it
was a controlled trial and they gave some of the patients a booklet of
metaphors and stories that convey the pain experience basically to help people
give language to what they were going through and they gave another group just
a list of you know things to distress suggestions for distressing and the
amazing thing that they found was that the group that was supplied with
metaphors and language had real measurable significant gains in their
well-being you know their pain was not decreased but their ability to cope with
it was better which I feel like is kind of mind-blowing and really exciting and
points to the way that there’s so much important research to be done about the
the need we have to put put words and metaphors to our experience so I thought
what I would you is given this is that I might have
us do a little writing exercise and you can you know feel free to do this or
just jot some notes or to do it later but one of the things that I was
thinking about as I was as I was as I was wondering you know how to how to
describe a possible method for coming up with metaphors is um I really wanted
also to come up with language that expressed the idea that um that pain
isn’t necessarily my enemy I know people have a lot of different sort of feelings
about this stay with the treatment of cancer in particular right we always
hear that the person has been in a brave battle with cancer and I agree that
there are many times that I really feel like I’m fighting pain or that pain is
just beating me but there are other times where I don’t want my life to be a
constant war um so you know I have a poem extended poem at the beginning of
the book where I kind of like I describe pain as sort of like a cross between an
Egret and a space alien I know it’s it’s a weird thing you can check it out if
you’d like but but so one of the things that I want to invite you to do as we go
through these exercises too is uh to think about odd but non-threatening
metaphors for pain and for me that always starts with trying to observe the
specific physical sensations that you might have going on you know so you can
think about toys kitchen implements furniture
food you know anything that seems like not what you would associate with pain
in its most nefarious incarnations so this idea of trying to understand kind
of like a multi-step process in writing feign pain was actually taken from a
wonderful writer Michael Noll and he he did kind of an analysis of some of my
own my writing pain on his blog read to write stories
so Michael Noll has a great writing textbook that you can check out and I’ve
included a link to his work in his blog also on the handout um okay so he
describes what I do as building complex metaphors so the first thing that we’re
gonna do is um just start with the basics and I don’t write for a few
minutes I’ll do it too and I’m just going to give us three minutes for each
of these things so the first thing that we’re gonna do for three minutes is I’d
like you to just focus on the describing very concretely a kind of pain in a
specific part of your body and some of the language that um melzack uses that I
find helpful sometimes pain seems to me to be very near the surface of my skin
and sometimes it feels very deep in my bones I’ve heard of many pain people
describing a pain in temperature so is it hot or is it cool is it um is it is
it tingling or is it stabbing right is it uh and then you might even go beyond
those sensations to talk about like you know is it nauseating is it annoying is
it is it you know weirdly sludge like I don’t know anyway
um so we’re gonna focus on just a specific part of your body if you’re not
in pain at all bless your heart and you can focus maybe
on your muscle tension okay so one specific part of your body and we will
write for three minutes just described okay you take half a minute or so and
finish up that that idea okay so the second thing is that we’re going to take
that whatever sensation you wrote and we’re gonna start to get a metaphor II
so you can look at objects around the room think of objects in your life think
about if the pain was a substance if it was a food if it was a person if it was
a mode of transportation if it was clothing and one of the things that
Michael Noll points out that I that I like is that he says don’t swing for the
fences right away take a few practice cuts at easy pitches so he says that
it’s it’s helpful to start with something tentative if you don’t know
that you’re gonna want to commit he says you can start with the phrase it was
sort of like so think about the pain as an object you can start with it was sort
of like and we’ll just write for a couple of minutes on that okay and then there’s a last piece to
this so I’ll just share that when I was planning this but then also today like
for some reason I keep thinking about the image of those there’s a name for
them I know like the the the segmented gloves that Knights would wear you know
like they’re jointed and they’re like the sheath over your hands I keep
thinking of my hands are bugging me always but right now and so I just keep
thinking about those clanky things right and how its how hard it would be to to
move your hands and so in my mind I’ve got these gloves on right and now here’s
where I would like you specifically to have some fun with this so we’re gonna
move into ridiculous ridiculousness and so I would take the knight glove
metaphor and I’m gonna write a little bit about what did you do you like to go
through life with those days I might try and think about what it would be like to
try and butter a piece to be a piece of toast for my son wearing those darn
clothes so you know you can take this in a drink any direction you want but get
really serious about your metaphor and just take it like a step further than
you think is okay all right so we’ll try that for two
minutes we gotta come to people write in and say that the they think the word is
gauntlet oh thank you all right so um so I ended up having fun
with that image because I thought about you know just how great it would be
animate meeting to like slam one of those gloves down on the table or how
you could always hear me coming how I might like to paint little finger nails
on my gauntlets how I would magnetized things and I might have kitchen magnets
stuck to them you know it I sort of like follow a metaphor into ridiculousness
but then often I find that even when we when you let yourself free associate
then I would I often end up finding the space to come back into something right
like so towards the end of writing I was thinking about you know the battle
itself and I was also thinking about how with an invisible illness how much I do
want people to see it and how I do sort of wish I had these noisy things I could
rattle so people would know what was going on with me and then the last thing
that Michael Noll writes about is that which I didn’t notice I was doing is
that you know making lists of I was doing this I would do this or it would
look like this and like this and like this that sort of a listing is a kind of
brainstorming that allows for a lot of fun images to come out and so yeah I
hope that that was nice and enjoyable for you and I just wanted to end by
saying that um you know I wrote a whole book it was really driven by metaphors
about chronic pain but I really feel like I’m not done with the metaphors
because I for my for myself I feel as though metaphors help me function and
they helped me understand what I’m going through on a day-to-day basis when I
talk with other people about the metaphors and the
pain I’m feeling it makes all of us feel less alone and I have seen you know so
much brilliant writing in the past couple of years come out by people who
are writing about chronic pain and and I feel like we’re all working together to
build a language to both explain our experience to each other and to more
fully explain it to others and so I think that’s important work and so I
hope that that we will all continue doing that and while writing about the
pain itself the experience of pain isn’t a joyful one I really do find joy in
getting to know the pain through metaphor and in sharing it with other
people so thanks for letting me talk and I’m looking for your questions and
thanks so much for joining us awesome Thank You Sonia that’s really
interesting I was i myself was trying to follow the prompts so what I’m
interested in it I don’t know if anyone type theirs on their computer it might
be interested in like maybe sharing like a line or two yeah there’s some examples
and I know you know as we’re sort of talking about it it can be really
personal so if you’re not comfortable doing that that’s fine but if anyone has
like a sentence or two they came up with that we’re kind of felt was was a good
one please send that along all right here we
have one is let’s see it was sort of like an army of fire ants marching
across my skin my metaphor I’m desperately wishing I had a can of raid granule you’re in there two more coming
in here so I have water sand and silicon mixed in to form a tight bond
of my fortress okay I love ya that’s a really lovely one well not lovely to be
feeling that right right right sort of just lovely because the image is so
specific that it’s like yeah I felt that too right oh this one’s really great and
I’m not sure I’m gonna pronounce this correctly about me giving my best shot
the pain from the osteonecrosis that I have in my skeletal system often feels
like a hawk is scavenging for food within my various joint capsules holy
yeah TV’s on but this Hawk is never satisfied he’s scavenged the scavengers
altered a day and night once the hawk emerged in 2006 he’s never
left wow that’s great that’s breathtaking and actually it’s
real interesting because the next one is also similar birds of prey situation
going on Wow vultures my shoulder is gracefully ugly
claws Clinton’s in my bones I’m heaven Oh had me there we have a ton coming in
and they’re all really amazing and so what and something Sonia and I had
talked about and I would like to do is and especially seeing how awesome these
ah and hard different and I feel like I
could just we could spend the next like 20 minutes just but what we’d like to do
is taking these and feature them on our blog so and I forgot to make a slide
with this information but what we can have people do is if if folks are
interested in sharing and having their metaphor featured on our blog if they
could mail it to me and that’s Emily at USP foundation org and then I can share
it with Sonya we will you know kind of go handful to share and be able to
highlight them that way yeah we read it read a couple more since
we have they’re so good I feel like and we’ve got like like Chow at least 20
people have submitted them which is um let’s see this one is about CRPS pain
today’s pain is eating away at my hand the way a ravenous black bear gnaws on
the frozen carcass of an early winter moose whoa yeah pretty amazing oh I feel
like a lot of people are killing the animal metaphors yeah the pain is a
freshly boiled kettle being poured into the teacup of my ankles oh my god that’s
that’s like so it’s very striking right yeah and like you think very commonplace
and it’s think to of like you know if you’re gonna take it a step further like
what does that tea taste like or who is drinking that tea like mint tea yeah whoo sorry I’m gonna like I’m gonna have
to cut myself up because I would just read all like you got a piece of cotton
wool or eating one of those Safeway sugar cookies with pink frosting that
crandall instantly and making teeth hurt oh my god about what you kind of got
your geminal neuralgia pain that’s what that would mean that’s fantastic I mean
the pain is terrible the metaphors amazing I know it and this one’s also
okay I’m gonna do one more because otherwise these are all incredible but
this one like someone’s doing home renovations in my skull except they
accidentally took out a support beam and I’m pressing against the walls to keep
the ceiling from caving in oh my gosh I mean you can feel that right yeah
amazing Wow now these are really wonderful so again because
these are also great and I feel and there also everyone wrote just like a
few sentences right and I very like digestible and just really powerful so I
feel like we could probably share a bunch of these on our blog so again you
know please send them over to Emily at u.s. foundation Network I will share
them with Sonia and we will you know put together a little compilation and then
share them on our blog and on social media and that sort of thing so then we
also um you know a bunch just read you these awesome metaphors out they specific questions I wanted to get to
those so one question someone had asked was that they many creative writers they
know communicate metaphors have nests yeah I don’t know if I’m pronouncing
that correctly and I think that’s where you like yell or see you’re using like
colors or sign I think yeah but so they were wondering if that’s something that
you sort of have or um or if you just say it’s just your creative spirit I
have a I think a lot of people creative people have some version of this I have
a weird like I happen to have a weird like spatial thing whereas almost
everything I’m doing ends up connecting to locations for me I don’t know why
that is or if that’s even related to that but um I do think I’ve got like an
especially like low Association filter so like and I think that’s something
that’s like like a sport or a skill that you can work overtime to like let your
brain associate in weirder directions so I just feel like I’ve really built that
up over time but I think yeah and I think too like there’s something about
you know some creative writing instruction that tells us to restrain
our metaphor and not be too wild and so I think you know it too
to teach yourself over time that it’s okay to break that rule and really go
wild like if it makes you happy you should just do it and that’s right ties
into this other question and we have it was someone saying or asking and they’re
curious if you see yourself more as an adult or as a child when you’re writing
about painting oh I love that I love that question because I’ve been thinking
I you know I teach undergraduates and and a lot of them are at the age like
betweens childhood and adulthood and a lot of them are like are sort of you
know wrestling with like Oh being an adult seems so stressful and so I just
told them the other day in class you know you can you get to keep part of
your kid if you want to you just have to learn how to function as an adult but I
really feel like for me my particular brand of writing works well if i key
into the kind of views and opinions and associations I’ve had since I was a
little kid and so I yeah I guess I guess there really is that I have that strong
element of wanting to stay connected to that and so yeah that’s such a great
question or insight I really do think I go in little kid directions a lot ya
know you kind of have to have that like childlike kind of curiosity yeah and
since play you know right someone was asking do you think that metaphor is
especially suited for the sort of unquote wordless topics like wreaths or
do you use them heavily and writing about any topic I think that’s a great
question I mean I think I know I overuse them no matter what I almost think as
though if there’s something like an abstract or complex experience I’ll go
to a metaphor first to try and then feel my way into
explaining it to myself and then other kinds of rating will follow but I feel
like especially for really internal experiences where there isn’t a lot of
external expression I think those are the kind of things that are so helpful
for that metaphor can really help us break down that barrier but yeah I think
I think with almost any personal experience a surprising metaphor can
sort of allow someone to come in and experience it with you
so yeah yeah okay we’ve time for a few more questions and there’s a lot of
great questions so if we don’t get yours just a reminder you can tweet at Sonya
you can email us you can find on her website I put my email address on the
handout so if anybody wants to contact me that’s great too oh okay okay so yes
in your metaphor is this on your or I and we will combine them somehow
so someone else asked and I think this is a really great question especially
for you know for us teen foundations community a lot of our can really just
build and so she was asking what if you have trouble expressing your pain and
then like a non-threatening metaphor or you know when the pain really is that
consuming and debilitating like how do you have any tips for trying to like
find us the mental space to be able to put it into words
yeah I mean I’ve also I’ve often had the experience I was just having a
conversation on Twitter with its folks about this but actually when I’m in a
lot of pain it’s much easier for me to text or write even than talk like for
some reason you know verbal expression is really hard for me
I often if I’m feeling like I just can’t do metaphor or things are really bad I
focus just on color like a lot of times I’ll just close my eyes
and I will just think of oh you know I think of like a storm or I think of you
know the Northern Lights like sort of just this flow and then also kind of
like the lava-lamp image like when I’m having when I feel like I’m really
getting taken under by stuff like I just go to those basic images of like images
of flowing and you know light and dark in color and even having an image like
that in my head lets me watch something and then I feel like I’m less I’m being
taken under by it less and so then sometimes I mean really sometimes what I
do is I’m just writing simple words like single words or phrases on my the
notepad in my phone or texting to myself and I do it mostly because it’s
comforting to me and also when I’m in those intense experiences you know where
you really feel like you’re just breathing through it from one second to
the next I’m almost using those words as like
stepping stones like let me just get through this to the next thing right and
um that’s the part that really does feel sort of like an altered state you know
but um I don’t I don’t do that out of a sense of like I’ve got to write about
this or I’m making an essay I just do it as a way to get through it and then
often when I go back it ends up being that I do want to use it for something
because it tends to resonate but yeah so I you know I I use this often the idea
of images you know both to write things for other people but also just for you
know for coping mm-hmm I think it’s really interesting because I don’t know
if anyone had tuned in to our webinar earlier in a month but we did a webinar
on art therapy um become you know certified in art therapy
it’s a very you know has increasing like call credibility and it’s interesting
that something similar or writing necessarily yeah you know it I feel like
it is such a good it can be so Sarah Pugh t’k and from what you know the
comments were getting from people it seems like a lot of people you know
similarly so just a couple more question I’m something that kind of relates to
the last question was sort of how do you take care of yourself when writing about
pain can be kind of you know emotional or difficult to do yeah I mean I think
I’m always writing about more than one thing at a time so I wrote the pain
essays while I was writing other stuff that had nothing to do with pain and I
like the ability to to go back and forth and actually I wrote everything in pain
woman was just written while I was having particularly bad pain days so
when I was feeling better I would be for the most part writing other things and I
think you know you know writing about the pain has ended up being a way to
also of self-care partially because number one I’m I tend to like to make
jokes and so a lot of times if there are funny experiences or like really awkward
experiences that involve pain like there’s a whole essay in the book about
you know like chronic pain and sex and how I wrote an essay about that topic
and how awkward it is for Oprah Magazine and then I wrote a little tiny thing and
then I wrote a bigger essay about what it was like to tell my husband that I
was writing about our sex life for Oprah and now I was like what have I done and
used one he’s like this is great it’s gonna be fine and I’m freaking out and
so yeah so I you know I mean I think that there’s always funny stuff
you know for me and so I really try and like save that stuff or I saved the
moments where I’m like there’s some awkwardness or there’s just you know so
that then you I kind of have a scrapbook of like you know these are moments where
pain has not only taken something from me but also not like I guess you could
say in a way given me something or brought me to the point where I would
not have been here without pain and I I write a lot about like my connection to
other people with pain because that has been so important to me like everybody
who is on this webinar and everybody who contacts me you know and who I read so I
end up you know I I write about also all the ways that I’ve learned to take care
of myself like I am by nature pretty type-a but I’ve had to be like tight be
on the couch person you know so yeah I I don’t know if that answers the question
yeah um so a couple more questions for you and then we’ll let you go and move
on to our updates but someone was asking about what do you do when you are having
or do you have any sort of personal tips for experiencing like writer’s block or
feeling sort of stack and writing about paying or you know how do you how do you
get out of that right that’s a great question I mean my my general philosophy
about writing is that I set a time period that feels okay and doable for
the day you know whether it’s an hour or whether it’s 15 minutes and I you know I
sometimes I’ll even write the time period on like a piece of paper and then
I know I have I’m gonna try and focus for those 15 minutes or an hour half an
hour but I have no rules for what I produce so it doesn’t matter like I’m
writing whether or not I write great sentence or one great paragraph or
nothing I also am allowed to go on Twitter like I have I just you know as
long as I’ve got my butt in the chair and I’m playing with words usually what
I’ll do with I’ll get to the point where I’m just bored enough to start playing
with playing with language and that’s like the only goal for me I am NOT hard
on myself as a writer and I don’t evaluate my daily production based on
word count based on was this good or bad I just don’t care really and I really
think that it’s just like taking your meds every day like every day I show up
to the page every day I feel like I’m consistently pretty terrible but over
time like you know I clean things up and then things are you know they’re they’re
pretty doable but so that’s my that’s my sort of system is like no judgement at
all okay that’s really helpful and that’s nice to hear from you as feelings
as well as reassuring so one last final question it someone asked at the
beginning what publications have you found to be most receptive to chronic
pain related content or do you have sort of suggestions for where people might
you know try submitting their work definitely I do so one of the links on
the handout is to a part of my blog where I keep a list of books in
different genres creative creative writing mostly nonfiction about pain and
disability so I’ve got first a section of memoirs I think and then there’s a
selection of journals that are focused on pain and disability so you could
submit to any of those there’s there’s just a really cool a lot of the people
like oh there’s some journals like um like rogue agent is what is one where
I’ve written stuff the sort of like weird floaty pain paragraphs that don’t
fit into an essay I mean who knew that’s a poem like I’ve had poetry published
that was just sort of a weird paragraph so you never know what these things that
you right are gonna turn into oh and also so I’m editing a an upcoming issue
of brevity and that’s a a journal of brief nonfiction and we are running
we’re doing a special issue on disability and obviously chronic pain of
all types is it’s a disability for many and so if you want to submit that’s a
great it’s a great outlet and we’d love to see your work the rumpus has been
wonderful but yeah check out that list because there’s a lot of there’s a lot
of good places awesome that is great to know and it almost I don’t know if you
use – – but it seems like there is an increasing number of outlets that are
you know interested in covering sort of health issues and disability issues
which is really nice to see I totally I find that definitely if you’re on
Twitter I’m always sharing that kind of stuff and there’s more and more calls
for submission so it’s super it’s like it’s an exciting time to be trying to
experiment with this awesome so on that note it’s 2 o’clock so we’re
gonna switch over to our updates but before we do I want to read one last
metaphor okay I’m reading all of them and I just can’t resist one is getting
out of bed the first sour note hits step and
stumble a cymbal crash as the joints fail to find a spoon ah lovely
um but yeah again guys just remember to send your metaphors over to either of us
or to both of us if you are interested in having them share and we can sort of
suss out if people are comfortable with like first names being shared or you
know full names or whatever it might make sense but I think these are really
wonderful and awesome right there in the world so Oh money so much um you are
amazing and you know as therapeutic as writing about chronic pain can
personally I mean it’s also just such a powerful way to try to raise away
and people who don’t have chronic pain and to try to get them to understand so
the work you’re doing is very much appreciated by us and we appreciate your
time this afternoon and so with that everyone just a plug for Sonya’s book um
asked us to put this up here but we wanted to so there’s information about
purchasing it on her website sonjia cuher burke hanson rom-com and you can
purchase that on places like Amazon Barnes and Noble you know all the
respects you check that out oh that again and we’re gonna move over to our
department update like ten minutes so we encourage you to stick around but if not
we will police at our next webinar in January so thank you again to Sonya okay so I know we have some staff members
waiting in the wings who are ready to give us some updates about things we’re
working on as an organization we do have a couple people who were not able to
attend to give their department updates so you’re gonna be hearing from me Emily
a little bit more so the first update is from laurie menorca on the Ambassador
Program but Laurie is actually running her support group as we speak so she
wasn’t able to give the update so just some quick things the nomination period
for ambassador of the Year is coming up nominations will be due December 31st we
will be sending out information about how to nominate folks in our next
newsletter which comes out December 2nd she also wanted to mention some ways to
get involved which of course participating in any of our support
groups you can find information about those there online and over the phone
you can find information on wwwp n connection org also another awesome
thing you can do is distribute materials and all of our materials are free we
have a bunch of different brochures and book
it’s with a lot of great information on pain and you can distribute those
anywhere you know your doctor’s office your local library obviously try to get
permission first but you can order those for free at USP and foundation.org
backslash order – materials so then we have Shana on the phone hopefully to
give us a little update about to do advocacy Shana are you there okay yes I
Sheena hello okay great so on this slide you’ll see that we have quite a few
engagement opportunities for you all to consider participating in and if this is
your first time joining one of these pep talks and you’re new to the advocacy
program what we do is we create various online campaigns that lets you either
submit a letter to a specific lawmaker or an entire committee make phone calls
utilize social media etc with just a few clicks of a button and you can access
all of these opportunities by visiting the advocacy section of the u.s. Payne
foundation’s website so at the state level we are actually running two
campaigns right now the Massachusetts Senate bill 1262 and the New York State
mid-year formulary campaign so the Massachusetts bill I’ll talk about first
basically it would ensure that every patient or resident of a healthcare
facility has the right to prompt assessment and treatment of his or her
pain with subsequent reassessment to ensure the treatment safety and efficacy
and our engagement online will let you submit a letter to the Senate Public
Health Committee asking to refer that bill favorably out of the Public Health
Committee if you go to online to our campaign will break down the bill a
little bit more simplistically for you because I know I’m I’m going a little
bit fast here but everything’s there on the online engagement to learn more
about the bill what it would do why it’s good for pain patients then in New York
that engagement lets residents send a letter to Governor Cuomo asking that he
signed this legislation into law now what this bill would
it would end an unfair practice that’s called non-medical switching again if
you go into our advocacy section that you can look up all of our key
priorities and issues non-medical switching is there basically this bill
stops mid-year formulary changes so insurance companies in New York can no
longer reduce coverage for medications during the health plan year moving over
to the federal side we’re actually running two online campaigns that
relates to the recommendations released by the pain management best practices
interagency task force that’s overseen by the Department of Health and Human
Services for those of you who have been on our pep talks and webinars before I’m
sure you’ve heard Cindy talk a lot about this so the first opportunity is a
targeted campaign we’re asking that a hearing be held on this pain report so
what you’ll need to do is enter your zip code find out if you have a legislator
on one of the two committees that we’re targeting either the Senate Health
Committee or the House Committee on Energy and Commerce their health
subcommittee if the online engagement tells you you’re not eligible to
participate what you’ll want to do is you’ll want to click on the other
opportunity we have which is called email members of Congress ask them to
hold a hearing on the new report on pain and that’ll let anyone send a
pre-written letter to their US Senators and Representatives next slide thank you
okay so this map just indicates the states that are still in session at this
time in other words they’re still doing business they’re still bills in play
Pennsylvania has a session deadline of November 29th for any of you who are
listening and that lives there Wisconsin they’re ending on December 6th and then
we have a handful that are ending at the end of this year December 31st and that
includes DC Michigan and Ohio Massachusetts has its last day of
session for the first annual session on December 31st and then it’s going to
start up again with its second annual session on January 1st New Jersey
scheduled to end its session on January 7th of tooth
and 20 and then you’ll see there in the orange Virginia’s having a special
session right now but it’s slated to end around December 18th now I’m showing you
this map because I want to remind all of you that you can utilize our bill
tracking tools that’s found by visiting our website US Pain Foundation org
backslash advocacy you’ll find an interactive map very similar to this one
and you can either click on your state or you can use a drop down menu to look
up an issue and right now there are about 243 bills that are either still in
play or that have been pre filed for next year that US Pain Foundation is
tracking so this is a time where we want to try and get bills moved out of
committees so they can pass both houses and make their way to your governor’s
desk and just a gentle reminder this is also a great time for you to be
scheduling meetings with state lawmakers if you haven’t issued like to see
address as a proposed bill for 2020 thank you thank you Shana so next up we
have an update from Ellen Smith who’s the co director for our medical cannabis
program Helen I was wondering if you are there and you might need to unmute
yourself okay can you hear me now yes you can okay okay let’s see let’s start
with some this is actually an incredibly exciting time right now and I think I’d
like to share something for those of you that might be new at listening to this
program at this time for the medical cannabis in this country for this past
year just to give you an idea of what we have been dealing with there’s been over
1,500 marijuana related bills that have been introduced this past year they’ve
range from adopting laws to legalizing marijuana for adults to address some
revisions in evolving medical marijuana programs and even to decriminalizing in
2019 just to give you an idea there are now ten states including a
then the District of Columbia that have legalized it for adult use and
recreational use twenty-nine states including also DC Guam and Puerto Rico
have legalized for medical use and a total of forty six states in our country
now have legalized access to at least some low THC cannabis products so we we
are coming very rapidly very forward which is exciting it’s been a long
process the first thing you see on the screen is about the University of
Maryland it is the first school that’s now at offering a master’s degree
program that will be run through the pharmaceutical part of the program of
their school in medicine and cannabis science which is huge this has never
been a actual program that you can get a degree in before we have a call to
action for s20 three two this is a very exciting bill that looks very promising
there’s men it has broad support bipartisan support which is exciting if
this bill can go through would increase the number of manufacturers producing
cannabis and which means we would have more product to be able to use for
researching it would reduce the restrictions for research to right now
it’s been a very difficult process this would actually streamline the time
restriction that would be expected to move forward when something has been
asked and one of these researchers there are anybody involved in this program
it’s trying to lighten up and get things to move faster they would stop having to
jump through so many hoops for each question that they ever had so much
researching this we hope that you’ll have time and consider taking part of
this online process you’re just going to click on to this link you’ll should be
receiving it in your emails and when you have a choice in either contacting your
legislator or specifically asking them to be part of the committee to actually
set up a presentation for committee hearing which would be very very
wonderful to get going so please if you can help
so this would be extremely important to get through there’s also a possible vote
coming soon that has presently 55 co-sponsors that would remove cannabis
or marijuana as a controlled substance countrywide which again would also open
up the door but strangely just today as I’m getting ready to go on to this
webinar all of a sudden I get an email and it’s so exciting what’s called the
Moore Act which we have been working on since 2002 also with America for safe
access in partnership the Moore Act was held today in the Judiciary Committee
and it was approved so if this gets to the point of becoming signed this is
going to allow for huge change take it out of schedule 1 the problem with
cannabis being allowed throughout the world of the country is that it’s been
stuck in scheduled one sitting next to heroin which is clearly not where it
should be so this would open up the doors for those states that are still
hesitant if we can get out of that and make it a more legal for everybody in
this country it would really make a big difference also if it was signed it mean
surance companies would be able to and encouraged to help cover the costs right
now the biggest problem they had a survey over 500 patients reporting the
biggest problem they have is the cost of cannabis because there’s no
reimbursement so this is huge so let’s keep our fingers crossed that this
continues to move forward so I could go on and on but it’s extremely exciting
time for the cannabis program right now and we’re definitely moving forward the
goal in our country is to see that every state has equal access equal rights that
you’re not going to be limited in one state because you don’t have the correct
qualifying condition our hope in the future is that it goes back to a
doctor-patient relationship of suggesting the consideration of cannabis
and not being limited because of state law so I think that pretty much covers
I don’t know if we have Cindy if you’re on I know Cindy was working on a few
things today said she might not be able to join us I’ll give her a second but if
not I will you guys are just getting to hear a lot from me today I’m sorry about
that so what Cindy wanted to want me to tell
you guys was that the FDA had a comment period that closed this Monday and they
asked the public’s views on two questions about pain one was should
sponsors of new opioid medications be required to demonstrate comparative
advantage relative to existing opioids and two what incentives would better
support and encourage the development of new treatments for pain so we submitted
a comment to the docket and an answer sorry that’s my cat meowing an answer to
the first question we said that well we would like to see new opioids have
advantage over existing opioids such as lower side effect profiles less of these
potential and greater efficacy we do not believe a comparative advantage over
every other opiate medication for the same indication should be a requirement
and then of course the second question obviously the answer is yes and we
urgently need some pre approval incentives in the pain space since
little has changed and the availability of new treatment options in more than a
decade except for really the creation of CG our piece for migraine and I’m
actually hearing from Cindy that she is muted I’m gonna unmute her because she
is there Cindy can you oh there you are okay we do have senior I’m so sorry
um Cindy’s I don’t know if you want to just expand on that a little more well I
think that pretty much covers it I mean just I want to thank everybody who did
have a chance to write in there were something like 400 comments the FDA pre
approved comments so it’ll take a while for them to pre-approve to see your
comment but hopefully we’ll be able to see them
to see our comment or potentially will make a link to it so that people can can
see our commenting we hope that the FDA takes these to heart they actually have
to issue a guidance on this sort of decision on pain management incentives
for new medications and for whether they should allow new opioids on the market
by I believe this summer so we’ll have to see what they come up with that’s it thanks Cindy
another thing that we wanted to mention just quickly is that there was a meeting
of the interagency research Coordinating Committee which is a mouthful
that’s a committee that Cindy used to serve on and now Gwen Herrmann our
clinical social worker and the director of our support groups serves on and they
had a meeting on Monday but Gwen is still traveling so she will be reporting
back to us on what happened at that meeting and that should be in our
upcoming newsletter on December 2nd so if interested in hearing what happened
at that meeting just keep an eye out for the newsletter and then finally one more
update and again when Gwen couldn’t make it so you guys are gonna hear from me
but we are up to 19 in person support groups across the country we have five
monthly conference call support groups so those are great for people who you
know have trouble traveling or you know don’t have one nearby yet you can just
call in they’re totally free and then you know the way that we expand our
support group offerings is by training peer leaders to run support groups and
they’re trained by Gwen who again is a clinical social worker you go for the
weekend and I forget Cindy also helps train people she’s been running as
Procrit for I think two decades or more so the two of them are have a lot of
expertise and they basically give you all the tools you need to know for
starting up a support group and having it be successful and effective for other
people with pain so with that in mind and our next training is going to be in
San Diego which I’m sure a lot of us in the Northeast would love to visit this
winter and that training will be February 29th through the 30th and we
will have details on how to apply in our next newsletter again it’s gonna be a
big newsletter on December 2nd and if you are signed up with us as a volunteer
we offer scholarships to attend this training so there is no cost or very
minimal cost actually attend the trainings so long as you’re signed up as
a volunteer and we have space so that brings us to the conclusion of our staff
updates I tried to keep it pretty quick it was about 20 minutes so thanks to
those of you who stuck with us just as a reminder you can email any of us at any
time here are all of our email addresses if you’re not sure who to email you can
just send one to contact at us paint foundation.org and we will get it to the
right person so just quickly does they don’t have any questions for any of the
staff we’re on right now I’m not seeing anything so far I’m just some folks
seeing thanks and you are so welcome we really appreciate everyone who joins
us on these these webinars if you haven’t signed up as an advocate or an
ambassador with us you can do so by signing up at us beam foundation org
backslash get – involved that will get you on to our mailing list and that’s
the best way to hear about all these different opportunities to take action
straight to your inbox so we highly encourage that and we’ll have our next
pep talk webinar on January 21st at 1 p.m. est we’re still working out what
the topic will be but we’ll try to have something awesome and interesting for
you and again you can always look at our archive of webinars on our website use
ping foundation.org backslash webinars you have to register to watch them but
those are all available for you at any time so thank you so much to everyone
for joining us today we really appreciate you and we hope to have you
at our next event take care guys

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